On January 18, 2018 my 15-year-old son died from bile duct cancer. Bile duct cancer (cholangiocarcinoma) is rare, aggressive and incurable. Even palliative treatments are hit-and-miss.

My son was no exception. He died 364 days after our family doctor first picked up “a problem” during a routine examination.

In an attempt to console myself, I reached out to the cholangiocarcinoma community of patients and caregivers. I asked them to tell me what positive lessons they had taken from their experience with a terminal cancer diagnosis. Here is what they told me:

1. Live in the moment.

“I was happily plodding along in life not really taking notice of the smaller, finer details of life around me. Cholangiocarcinoma, although hideous in nature, has sent me off on a new direction in life…now truly appreciating everything around me.” — Andrea S. (patient)

“I savor every moment.” — Meredith S. (caregiver)

“Live in the moment rather than worrying about what will happen tomorrow.” — Kris V. (caregiver)

2. Surround yourself with family and real friends.

“We now do things like drive 30 minutes to see someone for 15…” ~ Danielle S. (caregiver)

“[Cancer] has made me a better father. When I was first diagnosed my little girl, my only child, was 3 years old. Although I loved her with all my heart, I didn’t play with her a lot. I didn’t spend a large amount of time with her. I just let her be a 3-year-old. After diagnosis, and the fear that she would lose her daddy at an age before she had any memories, it caused me to re-evaluate my time spent with her. Now we are very, very close, and we have a ton of photos to bolster those memories.” — Steven W. (patient)

“My dad feels like a gift… I cherish every moment and talk to him about life and about the things we never spoke of.” — Ronita B. (caregiver)

“True friends… know when you need chocolate. They know when to hold your hand and wipe away your tears and cry ugly. And nine years later they still remember those things.” — Nancy U. (caregiver)

“Life is moments, and you better share them with the loved ones!” — Polyxeni K. (caregiver)

3. You are stronger than you think.

“It has definitely taught me that I am stronger that I thought I was.” Jennifer C. (patient)

“I’ve learned that hubby (patient) and I (caregiver) are stronger than I ever thought possible.” ~ Jamie B. (caregiver)

4. You are cleverer than you think.

“I’ve learned more than I ever thought possible about cancer and chemotherapy.” — Wendy B. (caregiver)

“It has taught me how to be my own advocate and how to research what my next steps are.” — Jennifer C. (patient)

“I soon discovered I had to do all the research because no one had ever heard of cholangiocarcinoma.” — Vanessa H. (caregiver)

5. Medical professionals care more than we realized.

“[I’ve learned] how dedicated the researchers are to finding a cure and how much they do care. The one speaker said that when you see the lights on all night in the lab, know that these people are working long hours to find a cure for you.” — Jody S.

“It was such a shock at first. I couldn’t understand initially why the doctor who performed the biopsy held my hand for so long. No physician had held my hand, even as a child.” — Charles E. (caregiver)

“I have learned that doctors are not God. They genuinely care about their patients (but some are better than others).” — Cheryl F. (caregiver)

6. Focus on the positive.

“It has helped me to set little goals and celebrate big when they are achieved.” — Jennifer C. (patient)

“Work has improved because I no longer focus on what could go wrong but on what if it goes right.” — Vanessa H. (patient)

7. Giving is better than receiving.

“I came with an idea for another charity. Cholangiocarcinoma is underfunded and under-researched so I looked at… giving post-grad students the opportunity to study alongside specialist surgeons, oncologists, academics and researchers.” — Brian L. (caregiver)

“I went every Tuesday to chemo. I fell in love with the clinic and the company that was treating her. I applied for a job with them and got the job. I love my patients so much…Perhaps a small silver lining is that she [my mom] got to see me reach that ultimate goal before her passing. My adult life got off to an extremely rocky start, and I’m glad she got to see me become who she raised me to be.” Wendy B. (caregiver)

“I was a high school special education and maths teacher throughout the ordeal… The students would ask questions and share their experiences with sick relatives. They still surround me with love and prayers even though I retired…” — Darlene E. (caregiver)

“I’ve learned not to take anything for granted, to take time to appreciate the little things in life, not to worry so much and that helping others is the most rewarding thing I could personally do.” — Matt R. (patient)

“I know I am a better person and in a much better place in life… I am so grateful for the chance to be a patient advocate, to work with the Cholangiocarcinoma Foundation and be the patient voice for so many… the work of finding better treatments and the hope for a cure has meaning.” Melinda B. (patient)

8. Cancer, even incurable cancer, can bring good changes.

“Kilimanjaro in 10 days time… I never thought I’d be doing that!” — Andrea S. (patient)

“This cancer has created a pathway to a better me and I have felt this even through my darkest hours, close to my last breath.” — Steve H. (patient)

My name is Penny Castle. I live in Johannesburg with my husband, Shannon and two teenage sons, Joshua and Christopher. I started a blog (mygarencrush.com) in November 2016 with the intention of documenting my adventures in growing veggies. I wanted to share my stories about the garden, happiness and to do a little boasting about my younger son, Chris, and all the useful garden structures he builds for me.
On the 21 January 2017 all that was forgotten. My elder son, Joshua, was diagnosed with a rare and aggressive cancer: cholangiocarcinoma. He was initially given 60 days to live and was sent home to enjoy what little time he had. He died on 18 January 2018.
Cancer has changed our lives in ways we couldn’t have imagined.
Aged just fourteen Josh had to face his own mortality. He had to manage the indignities of an illness which left him nauseous, low in energy and frequently in pain. Chris started high school in January 2017 just two weeks before his big brother was diagnosed. If I am honest he hasn’t had nearly the support from us as he deserved.
Not every change has been bad. As Josh put it, “If I survive, I wont be sad I got cancer. I’ve learnt so much about myself and about people.” He didn't survive but did inspire many, many people with his fortitude and good humour and wisdom.
Cancer taught us too eek out every moment and to enjoy slower, simpler pleasures. We are better people for it.
Our lives have had to change and so did my writing.. These days I write about happiness and cancer and hope. And despair. And grief. And hope again.